In March 2023 OIFE started the work of creating a toolbox on pain and osteogenesis imperfecta. The aim of the toolbox is to enable people with OI to learn more about pain management. It will also include information and tips which you can discuss with your care provider when communicating around pain. What would YOU…
The OI Foundation and the OIFE have partnered on a new project investigating the experience of pain for people with OI. The following survey investigates the experience of pain for people with OI. This survey is for anyone 18 years old or older and was written with input from OI experts from North America and…
Osteogenesis Imperfecta Federation Europe (OIFE), The Osteogenesis Imperfecta Foundation and The Brittle Bone Society (UK & Ireland) are offering a travel grant for the OI2022 conference in Sheffield, UK which takes place from Aug 30th – Sep 2nd 2022. Healthcare professionals and researchers working in a low or middle-income country can apply to come to…
The Impact Survey is now closed! We are very happy to announce that with the tremendous help of organizations and individuals around the world, we reached our ambitious goal of more than 2200 responses from 66 countries! More details to come. Thank you to the Osteogenesis Imperfecta Foundation, to Wickenstones and Mereo Biopharma for support…
On September 4th the Brittle Bone Society had their annual conference online. OIFE was represented by Ingunn Westerheim, who gave a talk together with Dr Laura Tosi and Tracy Hart from the Osteogenesis Imperfecta Foundation on how we can fill the many knowledge gaps we have in OI. The talk tried to explain how people…
In OIFE Magazine 2-2021 we published an interview with Brendan Lee, M.D. Ph.D., Baylor College of Medicine, Houston, Texas about OI-registries in the USA. In Europe we are developing the EuRR-Bone – which OI-registries do you have in the US? There is a contact registry with ca 2500 individuals signed up, which is sponsored by the…
In OIFE Magazine 2-2021 we published an interview with Brendan Lee, M.D. Ph.D., Baylor College of Medicine, Houston, Texas about research on the potential therapy Fresolimumab (TGFb). Who are you and what is your relationship to OI? I am a pediatrician and clinical geneticist who has engaged in basic, translational, and clinical research in skeletal…
We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…
The IMPACT Survey is a joint initiative between the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE), the OI Foundation & the pharma company Mereo BioPharma. Together we’re delighted to announce that English version of The IMPACT Survey is now live and will be running until 10th September 2021. Next week we will also launch the survey…
